A Repeat Visit

When Kelsey was very, very tiny, a jolly man in a red suit came to our house. (You can read about that visit here.)

Last night we were so very fortunate to get the privilege of a repeat visit.


Actually, we got a small preview of what last night would be like when we ran into Santa John at the Alexandra's House party. We saw Santa across the room, but thought we might not bother him since we knew we would see him at Kelsey's house on Monday.

But Santa saw Kelsey too!

From across the room he exclaimed, "Kelsey" in his big deep voice.

She popped up to attention and she began taking steps over to see him. All the way over Santa was so kind to encourage Kelsey in her walking, throwing in a "Ho, Ho, Ho" here and there.

He was amazing. He told Kelsey he had been watching her website, knew ways she had been being a good girl, and he even commented on her latest squeaky shoe video. Mind you, Santa didn't know we were going to be at the party. Santa just KNOWS.

Kelsey visited briefly with him there and he asked her if it would be ok if he came to her house on Monday. She got a very large grin on her face. This girl is very into Santa this year! He also told her that he would be bringing a very special present for her.

(waiting for Santa)

Last night, Santa arrived much like he did three years ago. You could hear the jingle bells coming up the sidewalk...

Only this time, Kelsey was awake and watching for him. (she was sleeping on his arrival when she was a baby)

Santa held her in his arms. He told her about the jingle bells he carried and showed her how one came from each of the reindeer. We also all learned that Fred is the elf in charge of the reindeer and that Mrs. Claus requests that we only leave Santa two cookies on Christmas eve!

He told her to "Always remember that Santa loves you," just as he had when she was a tiny baby.

He gave Kelsey to Mommy and pulled Kelsey's present out of the big sack he carried.
It was a very special gift!

Santa has to cover up when he is on his sleigh delivering presents and Santa decided to share the blanket from his sleigh with Kelsey! (Santa said that whenever he gives away his blanket a nice family makes him a new one.)

Santa's blanket even has jingle bells on the corners of it!!!

Kelsey snuggled with Mommy as Santa took out his big brown book of good boys and girls. Guess who's name was on the first page?


He went over all the ways she has been a good girl, talked about her teachers and friends at school, and how well she was walking in her Kidwalk and talking with her communication device. Santa even knew that her favorite color was purple!

Santa must be taking good notes!

Kelsey was just delighted with all of this information that Santa knew.
Kelsey got back on Santa's lap for a story about how his sleigh came to be and how reindeer came to be the animals chosen to pull it. (He tried elephants first, but that didn't work out so well.) Kelsey responded verbally to Santa as he told her this story.



Then Mommy and Daddy came over for a picture with Santa and all of us.

Kelsey gave Santa kisses on the cheek and I think Santa really liked them.
It was time for Santa to go tend to his reindeer so I told Kelsey to tell Santa "Merry Christmas" with her Ipad. She did. And then she proceeded unprompted on to the "Santa" folder that I had made for her to talk to Santa with.

She asked Santa "How are Mrs. Claus and Rudolph?"

Santa told us that Mrs. Claus was doing well and that Rudolph was busy working out to prepare for the big night coming up!

She told Santa "Thank you"

Santa said that it isn't often that he gets to make happy repeat visits like ours. It reminded us how very fortunate we are with Kelsey's continued health and progress.

Thanks Santa for everything! and Merry Christmas!

Happy Kelsey Enjoys Her Back Scratched.

Kelsey's Steppin in Her Squeeky Shoes

Good Advice

A good friend told me:

Your job is to teach Kelsey about Kelsey and what she is capable of. It is not your job to fight the world to understand who Kelsey is.

You cannot carry that weight.

Teach Kelsey who she is and what she can do and she will continue to astound them.

.......................................

Too many times I worry about how people perceive Kelsey. Do they see how smart she is? Do they see past everything to see her gifts?

Can they see what I see in her?

Focusing on just Kelsey and what she believes about herself is freeing.

And that is a big enough job in itself.

The Hospital Remembers

There aren't alot of people in my life that remember my baby girl.

Not the subject of this blog, the other one...

The one in heaven whom I never forget.

Rarely a day where I don't think of her and yet I don't know exactly what to DO with her.

She is there, she is real and yet she is not.

I am filling out the "family" folder in Kelsey's communication device when we first received it.

It is pre-populated with "brother", "sister", "mom", "dad", etc.

I delete the "brother". I delete the "sister".

Then I carefully go back in and add...

I choose an "angel" icon and program it to say "Kaitlyn" when pushed.

Weeks later I am working on the programming again.

My husband hears the device say "Family".

Then "Kaitlyn".

He says "Don't make her sad." (meaning Kelsey)

I suppose I don't know what to do.

I don't want to hide her from Kelsey.

I am sure that Kelsey feels the presence of her, probably at the most basic level.

She shared my womb with her.

And yet it is alot for a three year old to comprehend.

Kelsey's cognition is unaffected.

How we approach this now, how she grows up understanding the story of her life and how she came to be, is formed now.

Is "the event" that happened, that took her sister and harmed her, something to hide? Is it something to talk about?

I know the day will come when Kelsey will ask why she is different.

What will my answer be?

How do I let her grow up knowing her story and feeling "good" (comfortable) about it?

What are the right words and when do I use them?

__________________________________

I arrive home to a box full of mail.

Included is a tiny envelope.

I know this one is for her.

Even though Kelsey's school is also at this hospital, I know.

Every year it arrives, a special night just for her.

Usually it is Christmas.

I did not go the first Christmas. There was an ice storm and it was cancelled.

I do not think I could have gone anyway. It still hurt too much. Too personal to go to such a public place.

The second year I went. All bundled up with my baby girl in the lobby of the hospital.

Some one offered to take Kaitlyn's candle and light it for me, so I didn't have to take Kelsey in the bitter cold outside.

I stood in the doorway inside the hospital with Kelsey in my arms. I strained to hear her name. I love to hear her name.

Last year Bryan, Kelsey and I went as a family. It had snowed. They held it inside in the new part of the hospital. We made a luminary with her name and the messages to her. I got to go up to the front and say her name.

We put her luminary in front of the big picture windows. The snow was falling softly outside in the courtyard.

It was beautiful.

This card recently was for a different event. It went up on the refrigerator, just a as the reminder for Kelsey's field trip did.

October is infant loss remembrance month. Fitting for me because it was the girls' due date and when we chose to bury Kaitlyn.

The event was great. As I was leaving, Bryan said to have fun and the irony of "having fun" at a baby loss event was not lost on me. But it is fun in a way. To know you are not alone.

I saw families and couples, new little babies honoring older siblings they never get to meet until heaven. What touched me most was a daddy there by himself to think about his son.

There was a blonde little girl running around with her balloon.

I know that the hospital truly does not "remember". I know that some computer somewhere kicks out our names on a list that we would never choose to be on.

But at the same time, someone designed that invitation. Someone made the program. Someone address the envelope. Someone licked the stamp to send it to my home.

And for a moment, someone remembers.

Kelsey Roller Skates in her Kidwalk

Last week Kelsey was put in roller skates at school during her class time.

It made me so happy to think that they let her experience something like that.

Bryan and I were talking about it on Wednesday night and I was thinking it over in my head.

So many times you can feel Kelsey trying to activate muscles when she is trying to walk, but she isn't getting any results for her efforts. We wondered if the skates would help give her that movement feedback.

So Bryan got some at Walmart. We put her (hated) AFOS on and then we put on the skates.

This video is what she did.



She got the balloons the first time quickly (the first couple of minutes in the video) and then it was the second time that it took her longer. But she bent her knees some (IN THE AFOS!)

So cool that she moved the kidwalk all by herself (which she hasn't been able to do) and that she went for a target and got it! She found the balloons there herself. We hadn't pointed them out to her.

Kelsey discovers her first kitten

Help us Raise Money for IDC

http://www.firstgiving.com/kelseycan

Kelsey goes to the Lee Ann Britain center each week, several times a week to go to class with other children and for individual therapies.

It is a great place which Kelsey loves. She kicks her legs in excitement when I stop the car, knowing we are at school.

Kelsey swims, plays in their gym, works with her hands, and works on communicating her needs while there.

We ask for your support in helping Kelsey and other kids like her to meet their full potential.

http://www.firstgiving.com/kelseycan

Counting Our Blessings

This little girl of mine never ceases to amaze me.

Tonight was the first time we got these puzzle pieces out. It was the first time I asked her to do anything like this with numbers.

Where does she pick this stuff up?

I am so proud.

Presume competence

I really liked this blog post and the links within.

It is the theory I have believed in all along with Kelsey. Presume intelligence and figure out a way to help her get her body to cooperate enough to show us/achieve what she wants to do.

http://teachinglearnerswithmultipleneeds.blogspot.com/2010/06/living-least-dangerous-assumption.html

Communication update

Kelsey is amazing. Her ability to learn and adapt is amazing. I am a little biased.

Kelsey has known her “left” from her “right” for quite awhile now. This probably has resulted from the weekly therapy she receives and the verbal movement cues we give her. This past fall, she developed enough motor control to make choice selections based on telling her where each toy was located. (We would present both toys in her strongest visual field and then verbally tell her “ball on left, beads on right.” She would then choose which toy to play with.) Her early intervention SLP brought “yes” and “no” cards out and she began answering questions with those.

She has progressed from a borrowed three button device which we programmed to say "yes" and "no" and she accurately answered all kinds of age appropriate knowledge questions --even things I didn't teach her on purpose. She also gets a "kick" out of having a voice. (She also thinks it's funny to say "no" 99% of the time when asked if Mama is a good girl.)

I then sought out a borrowed "Go Talk 4" with 4 choices on each of five levels. She has mastered use of this device and quickly picks up new visual icons and remembers their associated meaning from session to session. We have now sent this back to the agency we borrowed it from.

We received in return a "Go Talk 20" this week to borrow for awhile. (They did not have the "Go Talk 9" available) The "9" would have been more appropriate for Kelsey's motor skills because the squares of the "20" are smaller than her fisted hand. She is not always able to activate the voice output of the "20" because of this, but gets her hand to the desired button and leaves it there so her intent is clear.

She is able to handle visually all 20 icons filled out which is amazing considering her visual impairment. She quickly learned all the new choices we added with the "20" and has remembered them ever since without me going back over them at all.

She also learned to do sentences. (with the "4" we had programmed in one word phrases like "ball", "eat", "play") With the "20" there is enough room that we did "I feel", "I want", "I need" and then various choices for those items.

We believe Kelsey is ready to move on to a more complex device which will allow her to have more self directed conversations. We are planning to get the Ipad with the Proloquo2go software and accessories.

We were excited to trial an Ipad at the Apple store using some free downloadable children’s games. We were amazed at what she was able to do with the device and the size of the icons she was able to access. Because the Ipad is essentially a computer screen, it acts like a dynamic “light box” like she uses in vision therapy. Kelsey was very motivated and seemed to be seeing better than I had even hoped she would be able to.

For now the GoTalk 20 gives her alot more choices.

I am so proud.

GoTalk 4 Videos

We needed to send our GoTalk 4 back that we were borrowing so we took a few videos to remember it!

Perspective

Being Kelsey's mom means that I get to ride a rollercoaster everyday. The problem is, rollercoasters are fun as an occasional treat, but not exactly a desirable everyday fare.

Yesterday Kelsey, Daddy and I went to breakfast. Our waitress asked us when we were almost done what Kelsey's diagnosis was. I told her Kelsey had cerebral palsy. She said her granddaughter was born with an inoperable brain tumor and wasn't supposed to live past 6. She is 10.

I said, "that's great." thinking it is always great to outdo a doctor's prediction.

She said "no" that her granddaughter could do nothing for herself, was blind and had 135+ seizures per day.

I did not know what to say.

She said she had been watching us with Kelsey. That she "took her hat off to us" b/c Kelsey was such a happy little girl. That she wished her "Haley" could experience that.

Someone always has it more difficult than you do.

Get a Job!

Thinking it was time Kelsey started earning her keep, we went to the velvet creme popcorn company. Doesn't the name alone sound appetizing?

Kelsey attended a build-a-ball event. And she made quite the creation. Luckily for us, we went to the latest shift of the day and there was only Kelsey and another little boy. So she had plenty of room and plenty of time to complete her ball.

She thought she was quite the fashion model the minute we put her hair sanitary cap on her.


We had fun and it was definitely a texture (sticky and crunchy) that we don't get to experience everyday.

Funny Girl

I asked Kelsey "Can you show Amy the "play" button?"

She said (pushed) "Yes"

I said "Kelsey push the "play" button"

And she pushed it.

I love her sense of humor.

(I should mention that "play" is up and to the left on her GoTalk which means crossing midline and reaching up high to push the button. So if she would have "got away" with saying "yes" to my question that would have been less work for her. :) )

The Hope of Easter

Death is a scary thing. At least I always thought it was.

When you are young, heaven sounds kind of boring compared to your childlike dreams of going to the circus or park.

As a child, your older relatives die and then you no longer get to see them. Gone.

But what happens when it is your baby that dies?

This is not the natural order of things. A mother is not supposed to outlive her child.

It is also something that makes people uncomfortable to talk about.

In many of my circles, it is as if Kaitlyn never existed and Kelsey has no disability...because no one talks of them. It is easier to ask if you have seen the latest movie than to ask how Kelsey has been doing in therapy or if I ever still think of Kaitlyn (I do. everyday.)

I heard the end of this song yesterday on the radio:



Steven Curtis Chapman wrote this after the loss of his 5 year old in a accident.

This is the promise of heaven.

To him, "heaven" right now is the ability to be reunited with his little girl and do all the things they used to do.

To me, I can picture in my mind's eye my two little girls running around in little white dresses with long blonde curls in a garden somewhere. (this is what I always pictured while pregnant before Kaitlyn died, only it was my backyard...)

My view of death has changed since Kaitlyn. While I am not in any hurry to get there, I am no longer afraid of it.

It has solidified the fact that because I have a personal relationship with Jesus and he died for my sins that I will be in heaven one day where my only job will be to praise Him.

And my little girl will greet me there and someday her sister, Kelsey, will run and play there too.

Happy Easter Everyone!

Adaptive Easter Egg Coloring

Last night we met Fletcher and his family for supper and then for Easter Egg coloring.


We had so much fun!

My goal is to have Kelsey experience as many age appropriate things as she can. I try to find ways to work around the physical limitations so she can still have the cognitive stimulation and experiences that typical kids her age are having.

We started with the traditional Easter egg dye and then some awesome kits that Fletcher's mom, Erin, found at Target.


We also used Ziploc plastic bags and a plastic storage container to put the dye in. We were able to seal the bags with the egg and the dye in them and have the kids squish the egg back and forth to color it. We tried the same thing with the storage container (rolling it back and forth), but for us the bags worked better.

Kelsey thought it was really funny to squish the bag back and forth.

The rollers in the kit above were great to place in the kids' hands and help them/let them roll the dye onto the egg. (The rollers are a spongy material with a plastic handle.)

The stamp kit was also fun to place in Kelsey's hand and help her stamp.

• 

• 
  

• I think the combination of the activities made it pretty successful and we sure had more fun than using an old, boring wire handle to fetch eggs out of a cup!
  
• 
  
• 
• 
  

The Harm of Low Expectations - aka "The File"

Kelsey went to a doctor recently. One who last time we saw them said essentially (not in overt words) "See you in 8 mo. I have no hope for your daughter's improvement in this particular area."

Kelsey and I are well-versed in ignoring poor "professional" opinions.

In this instance, I was fortunate enough to have one of Kelsey's therapists accompany us to the appointment. (She was kind enough to offer after I indicated how I felt about what happened last time.)

As it turns out, she was needed. The doctor did not believe what I had to say until it was confirmed by the therapist.

I understand the "professional skepticism" idea; however, I feel that I have educated myself and do not come across as a naive parent just believing what she wants to believe about my daughter.

I know from my own research the odds, percentages, etc of all kinds of things that three years ago I wasn't aware existed. I am fortunate that I have the intelligence that I do and have been able to find the answers, the research, treatments, and equipment that Kelsey has thus far needed.

But what of those parents that sit in a "care conference" with their newborn in the NICU across the hall and believe 100% what the doctors say when they say their baby will essentially be a vegetable? That she has a good brain stem and "will live for awhile"?

What of the parents that accept what a therapist has to say as 100% fact? The parents that believe that their child is not capable or smart because they are nonverbal? The parents that give up hope so as to not be accused of being in denial?

If I would have listened and believed everything I heard, Kelsey would not be who she is today.

Do you know how we know Kelsey can do the things she can?

Because I tried. I offered her the opportunity. I pushed for the opportunity. I researched what might work.

As a parent with a child with "special needs", you can not wait for the doctors or therapists to suggest to you what your child needs or is capable of.

You must determine that for yourself.

I am the one who got the Fisher Price piggy bank and tried to get her to take the coins from me. I am the one who got the knob puzzle, showed it to her and let her try to do it. I am the one that tries to give her a verbal "play by play" of what I am doing so she doesn't miss out...

I wanted to get a communication device to try with her b/c she knew left/right and was using it to make choices. We got "yes" "no" cards and guess what? She answered questions.

Then they brought a three button device (of which we use two) which we programmed to say "yes" and "no" and she accurately answers all kinds of age appropriate knowledge questions --even things I didn't teach her on purpose and gets a "kick" out of having a voice. (She also thinks it's funny to say "no" 99% of the time when asked if Mama is a good girl.)

Finally I sought out a "Go Talk 4" with 4 choices b/c I thought she could do it. and guess what? She can. (can't always get the button to activate the voice, but gets her hand there.) and I am confident she could do more choices at a time if not for her motor skills.

I am so tired of constantly having to prove to everyone that Kelsey is cognitively capable. It seems no one wants to give her the benefit of the doubt and wants to put her in a box until she proves otherwise.

But more than that, it makes me sad because I know that there are other Kelsey's out there whose parents did believe all the bad news....and because they believed, they never tried.

There are Kelsey's out there trapped in themselves, never getting the opportunity to live to their potential.

Kids can't do anything if not given the opportunity. Will there be things that Kelsey won't do? Sure. (just like with any kid (maybe just different things))

But do I know that she 100% won't do the things that I never let her try?

Absolutely.

Does she sometimes surprise me?

Absolutely. (like when she chooses to play with the baby doll when I am sure she wants to put on her beads or when she says "i" on cue to my "hello" or "un" on cue in the Mr. Sun song as if she always can get her words out that easily.)

I knew holding newborn Kelsey in my arms in her room that she was in there. I remember sitting in my grandma's wooden rocking chair, holding her in my arms crying, and telling her I loved her and knew she was there. That we would make it through this. That she fought to get here and I would fight for her now that she was here.

Maybe that has been part of the difference. When we lost Kaitlyn (Kelsey's identical twin), all I could think of was getting Kelsey here "safe". If she just made it to birth, everything would be ok. That she wanted so badly to be here and was meant to be here.

When she did make it, I knew she was a fighter. I knew she had a future.

These are all things I still know and now she can start telling us.

She can start telling her own story.

I hope that some new parent reads this and it provides encouragement. I hope it provides "permission" to believe.

After all, what do you have to lose?

I will leave you with something I wrote last year in response to a similar situation with a professional.

------------------------

I must steal "the File".

It is the enemy.

It is what professional review before meeting Kelsey which explains why they expect a certain level of ability. It is the paperwork which gives people misconceptions about Kelsey before she is ever carried through their door.

Yes Kelsey has microcephaly, porencephaly, optic nerve hypoplasia, possible cortical visual impairment, and dystonic quadriplegia cerebral palsy, but she is also a bright and beautiful toddler with unlimited mental potential.

Kelsey is not as scary as her file looks.

Kelsey really does not present (as the medical people would say) as you would expect someone with all her labels to.

She is much better.

Does she have a brain injury?

Yes.

Has she worked a way around it, improving every day?

Absolutely.

Fun with Kelsey

We have been having a good time around here. In fact, as noted by the lack of blog postings, too busy of a time.

Thought I would share some cute videos of Kelsey.

Only watch if you have not exceeded your daily recommended allowance of cuteness!



She really likes the "toes" part right now. I think the stretch feels good for her. She also really likes it when we label all her body parts as we help her touch them.



The Apple Tree rhyme that we learned at school a very long time ago!



Not sure that either one of these takes the place of beloved "Mr. Sun" but we sure did have fun!

Yes, No, Maybe So

Look at my girl go!

She has been doing yes/no cards on a black binder for about a week now. She is really really accurate.

Yesterday her home OT brought out this voice output device. When she was in her corner chair she couldn't quite get her arms to move enough to activate both "yes" and "no" as accurately.

Last night I sat her on my lap, so she had the ability to lean back and then forward. We asked her all kinds of things.

Later I recorded this.

"She's With Me" ~ Collin Raye

She’s with me
I proudly tell the maitre de as we arrive
He seems surprised
In a clumsy moment as he looks for room, for her blessed chair
A table stares, and their eyes show only pity
as they try to sympathize
Oh, how difficult that must be, look away
Day after day, they’ll never see, the joy you bring
Only happy at the times I know that she’s with me

I wear it like a badge of honor at the mall
I hear her call, the only way that she is able with a cry
Time to go bye bye, she can’t say why
Maybe tired, maybe hurting, god I wish that I could tell
Do I ever make her happy for awhile
To see her smile, makes my weak,
Though she can’t speak,
She let’s me know she feels my love when she’s with me

I know just what heaven looks like when I see that perfect face
For no other mortal heart could be so fair
I myself so weak and weary, so imperfect as a man
How could I be the one you chose to care for our girl
Never done a single deed to earn the right to share her light
Though it’s such a painful road we walk each day
Lord you have your ways, this I pray
On the day I stand before you, she’ll stand right by my side
When you look upon me, head hung down in shame
I’ll feel the blame, she’ll look at me,
And then she’ll speak, in that precious voice
Don’t worry ‘bout him my lord, cuz you see,
He’s with me